A Message From Kaden’s Parents:
This is Kaden. He is our reason for being, our reason for breathing, for walking, for existing. We were chosen to be his parents because we can and will do anything for him. Kaden has a disease called Spinal Muscular Atrophy. The number 1 genetic killer of infants. 90% of babies diagnosed with SMA before the age of two will not see their second birthday.
SMA is a progressive motor neuron disease similar to ALS but preys on babies. SMA first attacks the Childs ability to walk, crawl, and stand. Eventually it hinders motion from the very muscles that allow us to swallow, smile, or even breathe on our own. This is SMA.
Kaden was diagnosed in September 2014 and while we can say that we felt like a piece of us died that day, we know an even bigger piece has been reborn.
All of the things we once took for granted, we now do for our son & for every baby and family affected by this terrible disease. We would walk 1,000 miles for him because I know he may never be able to.
Kaden was born perfect. He passed the newborn screen with flying colors. We were delighted to bring our bouncing baby boy home and as we watched him meet milestones our hearts were filled with joy…until they stopped. We eventually stopped writing in his baby book because he seemed to be getting weaker maybe even losing milestones. We stopped writing because it was too painful as months went by and we had nothing to write.
We knew in our hearts that something was very wrong. He did fantastic at his 6 month well visit but as his mother, I was hesitant. His pediatrician always brushed issues off as “new mommy syndrome,” but I questioned his lack of rolling and baring weight. His doctor said since we have seen him roll in both directions by now we shouldn’t be worried and that he was doing great.
No parent should be blindsided by this disease. No parent should bring home their perfect baby just to watch them decline. No parent should have to explain their child’s disease to their doctor who has never heard of SMA.
When we received Kaden’s diagnosis we wanted to hide behind the curtains and lock ourselves away in our pain. We wanted to wallow in pity and mourn the milestones we would never see. We wanted to mourn the lifetime we thought we had with our son. We thought we would have to close the door on our dreams permanently.
The two things that kept ringing in our heads over and over in an endless cycle was: No cure. No treatment.
Then we looked down at his sweet face, his eyes that colored my soul, and his famous smile and felt hope. His life wasn’t going to be what we imagined it would be but it would be his and we would do everything in our power to make it the best life possible. He is still our perfect baby boy.
Learning About SMA
SMA affects 1 in 6000 babies. Statistically that’s the same as people who die in car accidents and yet there is NO awareness. 1 in 40 people are carriers of SMA and there is rarely any prior family history.
Would we have done anything different if we had known? Certainly. We would have had our son and loved him just as much as we do today, but we would have had the chance to be proactive, to help him become as strong as possible and to be ahead of his disease. We believe that anything worth having is worth fighting for and we will fight to the ends of the universe for our precious son.
What does our fight look like? It’s making our pool 90 degrees day in and out for Kaden so that he can swim for over an hour every day. Hopefully multiple times a day. The pool will give his body the freedom to move freely without gravity working against him and help him to keep the muscle strength he currently has. It’s making our house accessible to him so that while he will be unable to do things the way able bodied people do; he will be able to do everything his way.
Daily physical therapies that won’t make him stronger, but will help him keep the strength he currently has. It’s respiratory equipment and therapies to fully inflate his lungs daily so that they don’t shrink and weaken over time, braces on his legs to and feet to preserve his function and keep them from wasting away, the list goes on. Even his little wheel chair costs a hefty $6,000 that insurance will not cover. Soon we will need a van that can help transport him and his medical equipment.
Living For Today. Believing In A Cure
We used to dream about the future, now we live for today. We have learned to love each moment as we now know we aren’t promised years.
We are here today to be the voice for these babies that have been silenced. For the angels who have been restored in Heaven and those here on earth still fighting. We are here to raise awareness.
We believe that a cure for Kaden is a cure for his friends.
A cure and treatment are so close. In fact, the National Institute of Health recently chose SMA as the disease closest to a cure of more than 1,000 diseases. In fact, SMA is a model disease and researchers believe that a cure for SMA would directly benefit 1,000,000’s of people. Imagine no more Alzheimer’s, Parkinson’s, no more ALS. This could also directly benefit certain cancers. So why isn’t there any awareness or much funding for SMA?
Let’s work together to end SMA. With enough awareness anything is possible. Miracles can still happen today and we believe there is a miracle out there for our son and all of the babies still happen.
Every baby deserves the chance to grow, to thrive, to breathe, and to smile.
To learn more about Kaden or help in his fight against Spinal Muscular Atrophy, please visit or follow him on Facebook at www.facebook.com/kadenscure